Civic Intelligence

Osteogenesis Imperfecta Foundation

EIN 23-7076021 • 501(c)3 • Gaithersburg, MD

View Organization Page

Profile

Our mission is to improve the quality of life for people affected by oi through research to find treatments and a cure, education, awareness, and mutual support. There are at least four distinct forms of osteogenesis imperfecta representing extreme variations in severity and affecting 20,000 to 40,000 people in the united states.

656 Quince Orchard Road No 210Gaithersburg, MD 20878

www.oif.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

65th percentile

0.18x

Higher debt load relative to assets than 65% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Liabilities / Revenue

57th percentile

0.11x

Higher debt load relative to revenue than 57% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Net Margin

37th percentile

-0.7%

Higher net margin than 37% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Top Officer Pay

93rd percentile

$245,422

Higher top officer pay than 93% of similar nonprofits.

Top officer pay equals 9.4% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2025

Asset Growth

9th percentile

-22%

Faster asset growth than 9% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2024 to 2025

Revenue Growth

61st percentile

15%

Faster revenue growth than 61% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2024 to 2025

Balance Sheet
Liabilities / Assets65th percentile

Assets

Down

$1,660,457

Down $464,934 (-22%) from 2024

Liabilities

Down

$292,624

Down $254,831 (-47%) from 2024

Net Assets

Down

$1,367,833

Down $210,103 (-13%) from 2024

Operations
Liabilities / Revenue57th percentileNet Margin37th percentile

Revenue

Up

$2,607,851

Up $335,931 (+15%) from 2024

Expenses

Up

$2,627,305

Up $176,220 (+7.2%) from 2024

Net Income

Up

-$19,454

Up $159,711 (+89%) from 2024

Trend Graphs

Balance Sheet Trend

Asset Growth9th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$3.0M$2.0M$1.0M$0Assets 2019: $1,768,258Liabilities 2019: $271,555Net Assets 2019: $1,496,7032019Assets 2020: $1,745,584Liabilities 2020: $381,897Net Assets 2020: $1,363,6872020Assets 2021: $2,230,527Liabilities 2021: $192,429Net Assets 2021: $2,038,0982021Assets 2022: $2,054,090Liabilities 2022: $574,781Net Assets 2022: $1,479,3092022Assets 2023: $2,346,165Liabilities 2023: $670,918Net Assets 2023: $1,675,2472023Assets 2024: $2,125,391Liabilities 2024: $547,455Net Assets 2024: $1,577,9362024Assets 2025: $1,660,457Liabilities 2025: $292,624Net Assets 2025: $1,367,8332025

Highlighted filing

2025

Assets$1,660,457
Liabilities$292,624
Net Assets$1,367,833
Open 2025 Filing

Operations Trend

Revenue Growth61st percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$3.0M$2.0M$1.0M$0-$1.0MRevenue 2019: $1,835,341Expenses 2019: $2,109,750Net Income 2019: -$274,4092019Revenue 2020: $1,544,189Expenses 2020: $1,643,730Net Income 2020: -$99,5412020Revenue 2021: $1,897,607Expenses 2021: $1,624,284Net Income 2021: $273,3232021Revenue 2022: $2,112,061Expenses 2022: $2,287,948Net Income 2022: -$175,8872022Revenue 2023: $2,214,512Expenses 2023: $2,085,298Net Income 2023: $129,2142023Revenue 2024: $2,271,920Expenses 2024: $2,451,085Net Income 2024: -$179,1652024Revenue 2025: $2,607,851Expenses 2025: $2,627,305Net Income 2025: -$19,4542025

Highlighted filing

2025

Revenue$2,607,851
Expenses$2,627,305
Net Income-$19,454
Open 2025 Filing

Filings

Most recent year

2025 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,660,457
Liabilities
$292,624
Net assets
$1,367,833
Revenue
$2,607,851
Expenses
$2,627,305
Net income
-$19,454
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$1.66$0.29$1.37$2.61$2.63$0.02
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.13$0.55$1.58$2.27$2.45$0.18
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.35$0.67$1.68$2.21$2.09$0.13
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.05$0.57$1.48$2.11$2.29$0.18
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.23$0.19$2.04$1.90$1.62$0.27
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.75$0.38$1.36$1.54$1.64$0.10
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.77$0.27$1.50$1.84$2.11$0.27
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jul 1, 2024 to Jun 30, 2025
Signed
Jan 29, 2026
Return Version
2024v5.5
Gross Receipts
$3,325,665
Mission and Program Overview

Mission

Our mission is to improve the quality of life for people affected by oi through research to find treatments and a cure, education, awareness, and mutual support. There are at least four distinct forms of osteogenesis imperfecta representing extreme variations in severity and affecting 20,000 to 40,000 people in the united states.

Osteogenesis imperfecta foundation, inc. (the foundation or oif) is a georgia non-stock corporation incorporated in 1970 with the primary purpose of improving the quality of life for people affected by the bone disorder osteogenesis imperfecta (oi) through research into treatments and a cure, education, awareness, and mutual support. The foundation's headquarters are located in gaithersburg, maryland.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,599,239$1,191,432▼ $407,807
Cash and Non-Interest-Bearing Accounts$163,870$207,387▲ $43,517
Savings and Temporary Cash Investments$111,584$72,866▼ $38,718
Prepaid Expenses and Deferred Charges$74,763$61,893▼ $12,870
Pledges and Grants Receivable$21,968$0▼ $21,968
Intangible Assets$602$19,324▲ $18,722
Accounts Receivable$13,703$17,936▲ $4,233
Inventories for Sale or Use$7,336$7,107▼ $229
Land, Buildings, and Equipment, Net$8,804$6,782▼ $2,022
Total Assets$2,125,391$1,660,457▼ $464,934
Other Assets Total$123,522$75,730▼ $47,792
Liabilities
Accounts Payable and Accrued Expenses$111,792$113,199▲ $1,407
Grants Payable$117,500$87,500▼ $30,000
Other Liabilities$106,228$54,012▼ $52,216
Unsecured Notes Loans Payable$25,000$25,036▲ $36
Deferred Revenue$186,935$12,877▼ $174,058
Total Liabilities$547,455$292,624▼ $254,831
Net Assets / Fund Balance
Net Assets With Donor Restrictions$1,553,418$1,336,034▼ $217,384
Net Assets Without Donor Restrictions$24,518$31,799▲ $7,281
Total Net Assets Fund Balance$1,577,936$1,367,833▼ $210,103
Total Liabilities and Net Assets / Fund Balance$2,125,391$1,660,457▼ $464,934

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$6,782$39,433$46,215
Equipment$0$2,608$2,608

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2024$1,553,418$1,231,934--$1,336,034
2023$1,675,833$1,021,958--$1,553,418
2022$987,567$1,378,122--$1,675,833
2021$1,354,619$726,549--$987,567
2020$1,055,103$623,072--$1,354,619
Compensation and Service Providers
Top Officer Pay93rd percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Tracy Smith HartChief Executive OfficerFT$199,284$46,138$245,422
Katherine E CarterChief Program OfficerFT$135,886$6,904$142,790

Board Members and Trustees

NameTitle
Christine Wyman RossiPresident
Kara B AyersVice President
Kenneth FinkelVice President
Michelle FynanVice President
Billy HuangBoard Member
Cindy MedinaBoard Member
Emily F VoordeBoard Member
Julie HockerBoard Member
Michael SheridanBoard Member
Scott WallsBoard Member
Tony JacobsenBoard Member
V Reid SuttonBoard Member
Wendy E SacksBoard Member
Karen BraitmayerSecretary
James SharplesTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$2,137,240
Program Service Revenue
$215,927
Investment Income
$309,216
Other Revenue
$-54,532
All Other Contributions
$1,431,849
Change in Net Assets
$-19,454

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,817,795
Revenue Not Reported on Financial Statements
$-209,944
Revenue Not Reported on Form 990
$-117,999
Other Revenue Adjustments
$-221,658
Total Revenue per Audited Statements
$2,699,796
Total Revenue per Form 990
$2,607,851
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,341,753
Other Expenses$896,850
Grants and Similar Amounts Paid$388,702
Total Fundraising Expense$206,071
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$606,804$170,364$115,605$892,773
Conferences and Meetings$490,263$1,782-$492,045
Current Officers, Directors, Trustees, and Key Employees$179,868$48,961$32,548$261,377
Grants to Domestic Individuals$213,149--$213,149
Grants to Domestic Orgs$175,553--$175,553
Other Employee Benefits$69,716$19,575$13,283$102,574
Fees for Services Other$71,534$1,880$1,275$74,689
Payroll Taxes$51,667$10,816$10,572$73,055
Occupancy$41,912$11,767$7,985$61,664
All Other Expenses$27,818$8,100$3,508$39,426
Travel$24,807$6,965$4,725$36,497
Information Technology$7,609$26,008$1,450$35,067
Fees for Services Accounting-$20,052-$20,052
Office Expenses$13,219$3,712$2,518$19,449
Other Expenses$12,398$3,481$2,362$18,241
Pension Plan Contributions$9,573$1,691$710$11,974
Fees for Service Investment Mgmnt Fees-$11,714-$11,714
Insurance$4,895$801$2,943$8,639
Depreciation Depletion$5,719$1,605$1,089$8,413
Interest-$3,491-$3,491
Total Functional Expenses$2,037,443$383,791$206,071$2,627,305

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,909,899
Expenses per Audited Statements$2,837,249
Total Expenses per Form 990$2,627,305
Expenses Not Reported on Form 990$72,650
Expenses Not Reported on Financial Statements$-209,944
Other Expense Adjustments$-221,658
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
BOSTON CHILDREN'S HOSPITALBoston, MA501(c)(3)Fellowship Grant$50,000
The Regents of the University California Los AngelesLos Angeles, CA501(c)(3)Fellowship Grant$50,000
University of South FloridaTampa, FL501(c)(3)Contact Registry$25,000

International Summary

Offices
0
Employees
0
Spending
$145,000

International Compliance

Foreign grant records maintained
No
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (including Iceland & Greenland)Research GrantBrittle Bone Disorders Consortium Research Grant00$50,000
North America - Canada and Mexico, But Not the United StatesResearch GrantBrittle Bone Disorders Consortium Research Grant00$50,000
North America - Canada and Mexico, But Not the United StatesResearch GrantBrittle Bone Disorders Consortium Research Grant00$45,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$221,658
Fundraising Gross Income$122,838
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Strong Bones Houston$121,390$30,600$6,341$24,259
Dc Fine Wine$147,776$26,400$12,057$14,343
Total Events$599,413$122,838$221,658$-98,820
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Payable$54,012
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 6

“Membership in the oi foundation is open to all people who support the mission of the oi foundation. The board of directors determine the level and benefits of membership, and may change these from time to time. All members are entitled to voting privileges. Membership becomes effective upon receipt of dues.”

Form 990, Part VI, Section B, Line 11B

“After the form 990 is prepared by the independent accountants a copy of the return is provided to all members of the board of directors. It is also reviewed by the audit committee before being filed with the irs.”

Form 990, Part VI, Section B, Line 12C

“The conflict of interest policy covers all members of the board, its committees, foundation staff and their immediate families and business associates. It is monitored by annual written information questionnaire from the board president which is reviewed and maintained by the audit committee chair. The entire board reviews each transaction to come before the board for potential or actual conflicts of interest. If potential or actual conflicts (past, present or future) are identified, the person determined to have a conflict is recused from deliberations and voting. The identified conflicts of interest and appropriate recusals are documented in the minutes of each board or commitee meeting.”

Form 990, Part VI, Section B, Line 15

“The process for determining compensation of the following persons includes a review and approval by independent members of the executive committee. Comparability data used in the review process is obtained from national health council salary survey. The deliberations and decisions are documented in the minutes of the board or committee meeting. The compensation determination process applies to the following offices/positions and the most recent year for which this process was undertaken for each is identified: office/title - chief executive officer year of most recent review/approval - 2026”

Form 990, Part VI, Section C, Line 19

“Oi foundation makes its governing documents, conflict of interest policy, and financial statements available to the public on its website.”

Filing and Contact Details

Filer

Filer Name
Osteogenesis Imperfecta Foundation
EIN
23-7076021
Phone
3019470083
Address
656 QUINCE ORCHARD ROAD 650, GAITHERSBURG, MD 20878

Signing Officer

Name
Tracy Smith Hart
Title
Chief Executive Officer
Phone
3019470083
Signed
2026-01-29
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Tracy Smith Hart
Formed
1970
Legal Domicile
Ga
Voting Board Members
15
Independent Board Members
15
Employees
13
Volunteers
53

Preparer

Firm
Renner and Company CPA Pc
Address
700 NORTH FAIRFAX STREET SUITE 400, ALEXANDRIA, VA 22314
Preparer
Andrew E Young CPA
Phone
7035351200
Supplemental Narrative

Additional Explanations

Form 990, Part XII, Line 2C

“No changes from the prior year. The board of directors is responsible for the selection of independent auditors and oversight over the independent audit process.”

Financial Statement Notes

PART V, LINE 4:

“The foundation's endowment funds consist of restricted funds designated for a specific purpose by a donor.”

PART X, LINE 2:

“In accounting for uncertainty in income taxes, accounting standards require an entity to recognize the financial statement impact of a tax position when it is more-likely-than-not that the position will not be sustained upon examination. Management evaluated the foundation's tax positions and concluded there are no uncertain tax positions that require adjustment to the financial statements to comply with the provisions of this guidance.”

PART XI, LINE 4B - OTHER ADJUSTMENTS:

“Reclassification of event expenses -221,658.”

PART XII, LINE 4B - OTHER ADJUSTMENTS:

“Reclassification of event expenses -221,658.”

Raw XML AppendixShowing 400 of 849 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990/AccountantCompileOrReviewInd00
IRS990/AccountsPayableAccrExpnssGrp/BOYAmt0111792
IRS990/AccountsPayableAccrExpnssGrp/EOYAmt0113199
IRS990/AccountsReceivableGrp/BOYAmt013703
IRS990/AccountsReceivableGrp/EOYAmt017936
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0OSTEOGENESIS IMPERFECTA FOUNDATION, INC. (THE FOUNDATION OR OIF) IS A GEORGIA NON-STOCK CORPORATION INCORPORATED IN 1970 WITH THE PRIMARY PURPOSE OF IMPROVING THE QUALITY OF LIFE FOR PEOPLE AFFECTED BY THE BONE DISORDER OSTEOGENESIS IMPERFECTA (OI) THROUGH RESEARCH INTO TREATMENTS AND A CURE, EDUCATION, AWARENESS, AND MUTUAL SUPPORT. THE FOUNDATION'S HEADQUARTERS ARE LOCATED IN GAITHERSBURG, MARYLAND.
IRS990/AllOtherContributionsAmt01431849
IRS990/AllOtherExpensesGrp/FundraisingAmt03508
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt08100
IRS990/AllOtherExpensesGrp/ProgramServicesAmt027818
IRS990/AllOtherExpensesGrp/TotalAmt039426
IRS990/AnnualDisclosureCoveredPrsnInd01
IRS990/AuditCommitteeInd01
IRS990/BackupWthldComplianceInd01
IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt0THE ORGANIZATION
IRS990/BooksInCareOfDetail/PhoneNum03019470083
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt0656 QUINCE ORCHARD ROAD 650
IRS990/BooksInCareOfDetail/USAddress/CityNm0GAITHERSBURG
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0MD
IRS990/BooksInCareOfDetail/USAddress/ZIPCd020878
IRS990/BusinessRlnWith35CtrlEntInd00
IRS990/BusinessRlnWithFamMemInd00
IRS990/BusinessRlnWithOrgMemInd00
IRS990/CashNonInterestBearingGrp/BOYAmt0163870
IRS990/CashNonInterestBearingGrp/EOYAmt0207387
IRS990/ChangeToOrgDocumentsInd00
IRS990/CntrctRcvdGreaterThan100KCnt00
IRS990/CollectionsOfArtInd00
IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt032548
IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt048961
IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt0179868
IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt0261377
IRS990/CompensationFromOtherSrcsInd00
IRS990/CompensationProcessCEOInd01
IRS990/CompensationProcessOtherInd01
IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt01782
IRS990/ConferencesMeetingsGrp/ProgramServicesAmt0490263
IRS990/ConferencesMeetingsGrp/TotalAmt0492045
IRS990/ConflictOfInterestPolicyInd01
IRS990/ConservationEasementsInd00
IRS990/ConsolidatedAuditFinclStmtInd00
IRS990/ContriRptFundraisingEventAmt0476575
IRS990/CostOfGoodsSoldAmt0229
IRS990/CreditCounselingInd00
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt02137240
IRS990/CYGrantsAndSimilarPaidAmt0388702
IRS990/CYInvestmentIncomeAmt0309216
IRS990/CYOtherExpensesAmt0896850
IRS990/CYOtherRevenueAmt0-54532
IRS990/CYProgramServiceRevenueAmt0215927
IRS990/CYRevenuesLessExpensesAmt0-19454
IRS990/CYSalariesCompEmpBnftPaidAmt01341753
IRS990/CYTotalExpensesAmt02627305
IRS990/CYTotalFundraisingExpenseAmt0206071
IRS990/CYTotalProfFndrsngExpnsAmt00
IRS990/CYTotalRevenueAmt02607851
IRS990/DecisionsSubjectToApprovaInd00
IRS990/DeductibleArtContributionInd00
IRS990/DeductibleNonCashContriInd00
IRS990/DeferredRevenueGrp/BOYAmt0186935
IRS990/DeferredRevenueGrp/EOYAmt012877
IRS990/DelegationOfMgmtDutiesInd00
IRS990/DepreciationDepletionGrp/FundraisingAmt01089
IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt01605
IRS990/DepreciationDepletionGrp/ProgramServicesAmt05719
IRS990/DepreciationDepletionGrp/TotalAmt08413
IRS990/Desc0RESEARCH AND PROFESSIONAL EDUCATION: OIF SCIENTIFIC MEETING - THE 24TH ANNUAL OI FOUNDATION SCIENTIFIC MEETING WAS HELD IN CHICAGO, ILLINOIS ON APRIL 9-11, 2025. THE MEETING WAS CO-CHAIRED BY DR. RONIT MAROM (BAYLOR COLLEGE OF MEDICINE) AND DR. ROY MORELLO (UNIVERSITY OF ARKANSAS), BOTH OF WHOM ARE PAST OIF MICHAEL GEISMAN RECIPIENTS. THIS YEAR'S MEETING, TITLED, TRANSLATING DISCOVERIES INTO THERAPIES, BEGAN ON WEDNESDAY EVENING WITH A KEYNOTE ADDRESS FROM DR. NICK BISHOP (SCHOOL OF MEDICINE AND POPULATION HEALTH, UNIVERSITY OF SHEFFIELD, UK) WHO DISCUSSED DRUG REPURPOSING IN THE TREATMENT OF OI. OI CLINIC AND BONE HEALTH TOWN HALL MEETINGS - THE OIF CONTINUES TO HOST TWO OI CLINIC AND BONE HEALTH TOWN HALL MEETINGS EACH YEAR. THESE MEETINGS PROVIDE AN OPPORTUNITY FOR MEDICAL PROFESSIONALS WHO ARE TREATING PATIENTS WITH OI, AND THOSE WHO ARE INTERESTED IN BONE HEALTH, TO COME TOGETHER TO LEARN ABOUT OIF RESOURCES AND CONNECT AND COLLABORATE. ATTENDANCE RANGES FROM 50-100+ PER MEETING. VIRTUAL COMMUNITY CALLS - IN FEBRUARY 2025, THE OIF HELD A RESEARCH UPDATE WITH REPRESENTATIVES FROM AMGEN ON THEIR UPCOMING PHASE 3 CLINICAL TRIAL FOR ROMOSUZAMAB. IN THIS VIRTUAL SESSION WITH 45 ATTENDEES, DR. DIALA EL-MAOUCHE, CLINICAL RESEARCH MEDICAL DIRECTOR OF BONE, AND NAZILA SADIGHI JAFARI, CLINICAL PROGRAM MANAGER FOR THE TRIAL, PRESENTED DETAILS ABOUT THE 1-YEAR CLINICAL TRIAL, AND ANSWERED QUESTIONS FROM THE OIF AND FROM THE COMMUNITY MEMBERS IN ATTENDANCE. THE SESSION WAS WELL RECEIVED BY ATTENDEES, AND THE AMGEN REPRESENTATIVES WERE ABLE TO ANSWER MANY QUESTIONS ON THE CLINICAL TRIAL. AMGEN REQUESTED THAT THIS EVENT NOT BE RECORDED BECAUSE THEY WERE NOT ABLE TO GET IRB APPROVAL FROM THE OTHER COUNTRIES THAT THE TREATMENT WAS BEING TRIALED IN, AND SOME HAD STRICT RULES AROUND PROMOTING MEDICAL TREATMENTS OR TRIALS. IN MAY, THE OIF HOSTED A CALL WITH DR. ERIC STORCH, PSYCHOLOGIST AT BAYLOR COLLEGE OF MEDICINE, ON THE BBDC OI WELLBEING STUDY, WHICH HAS PROGRESSED IN ITS PUBLICATION TIMELINE. HE SHARED FINDINGS FROM MULTIPLE PUBLICATIONS THAT HAVE COME FROM THE STUDY AND OUTLINED THE FUTURE OF THAT PROJECT. IN SEPTEMBER, THE OIF HOSTED ANOTHER CALL WITH CHRISTOPHER JOSEPH DPT, DIRECTOR OF PHYSICAL THERAPY AT KENNEDY KRIEGER INSTITUTE WHO DISCUSSED MUSCLE GROWTH, WEIGHT MANAGEMENT, AND OI. RARE BONE DISEASE TELEECHO CLINIC SERIES - THE RARE BONE DISEASE TELEECHO IS HALFWAY THROUGH ITS 6TH YEAR, AND THE PROGRAM HAS CONTINUED TO SHOWCASE RARE BONE DISEASE TOPICS TO AN INTERNATIONAL AUDIENCE OF RESEARCHERS AND MEDICAL PROFESSIONALS. THE PAST YEAR HAS HAD A COMBINATION OF NEW AND RETURNING SPEAKERS. ONE AREA OF GROWTH HAS BEEN THE NEW FEEDBACK AND SUPPORT FROM THE NEWEST RBD ECHO FACULTY MEMBER, CARLOS FERREIRA, MD (NATIONAL INSTITUTE OF HEALTH). DR. FERREIRA HAS HELPED THE ECHO PROGRAM FIND NEW RARE DISEASE TOPICS AND IS HELPING DR. TOSI CONNECT WITH NEW SPEAKERS. THIS HAS HELPED THE RBD ECHO EXPLORE NEW TOPICS AND EXPAND ITS PROFESSIONAL OUTREACH. GI SURVEY - TO BETTER UNDERSTAND THE RELATIONSHIP BETWEEN OI AND GASTROINTESTINAL SYMPTOMS, THE OIF DEVELOPED A SURVEY MEANT TO CAPTURE MAJOR CORRELATIONS BETWEEN OI AND GI CONCERNS. NEARLY 400 COMMUNITY MEMBERS RESPONDED TO THE SURVEY AND THE OIF IS IN THE PROCESS OF ANALYZING THE DATA IN HOPES OF IDENTIFYING TRENDS THAT CAN HELP IDENTIFY FUTURE RESEARCH PRIORITIES. MICHAEL GEISMAN FELLOWSHIP GRANT - THIS YEAR THE OIF SCIENTIFIC REVIEW COMMITTEE SELECTED ROYA BAGHERI, PHD, AS THE OI FOUNDATION'S NEWEST MICHAEL GEISMAN FELLOW WITH HER PROJECT INVESTIGATING THE BIOMECHANICS AND PATHWAYS UNDERLYING PULMONARY VULNERABILITY IN OSTEOGENESIS IMPERFECTA. THE MICHAEL GEISMAN FELLOWSHIP GRANT PROGRAM AWARDS FUNDING UP TO $50,000 PER YEAR, FOR TWO YEARS, TO POSTDOCTORAL TRAINEES WHO ARE CURRENTLY WORKING ON PROJECTS WITH CLEAR RELEVANCE TO OSTEOGENESIS IMPERFECTA, OR WHO HAVE PROJECTS THAT WILL ENABLE THEM TO DEVELOP EXPERTISE IN OI RESEARCH. DR. BAGHERI IS A POSTDOCTORAL RESEARCH FELLOW AT THE UNIVERSITY
IRS990/DescribedInSection501c3Ind01
IRS990/DisregardedEntityInd00
IRS990/DocumentRetentionPolicyInd01
IRS990/DonorAdvisedFundInd00
IRS990/DonorRestrictionNetAssetsGrp/BOYAmt01553418
IRS990/DonorRestrictionNetAssetsGrp/EOYAmt01336034
IRS990/DonorRstrOrQuasiEndowmentsInd01
IRS990/ElectionOfBoardMembersInd00
IRS990/EmployeeCnt013
IRS990/EmploymentTaxReturnsFiledInd01
IRS990/EngagedInExcessBenefitTransInd00
IRS990/ExpenseAmt0508325
IRS990/FamilyOrBusinessRlnInd00
IRS990/FederalGrantAuditRequiredInd00
IRS990/FederatedCampaignsAmt01142
IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt020052
IRS990/FeesForServicesAccountingGrp/TotalAmt020052
IRS990/FeesForServicesOtherGrp/FundraisingAmt01275
IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt01880
IRS990/FeesForServicesOtherGrp/ProgramServicesAmt071534
IRS990/FeesForServicesOtherGrp/TotalAmt074689
IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt011714
IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt011714
IRS990/ForeignActivitiesInd01
IRS990/ForeignFinancialAccountInd00
IRS990/ForeignOfficeInd00
IRS990/Form8282PropertyDisposedOfInd00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt02.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt12.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt22.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt32.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt42.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt52.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt62.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt72.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt82.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt92.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt102.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt112.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt122.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt132.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt142.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1540.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1640.00
IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd0X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd0X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd1X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd2X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd3X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd4X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd5X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd6X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd7X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd8X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd9X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd10X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd11X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd12X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd13X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd14X
IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
IRS990/Form990PartVIISectionAGrp/OfficerInd2X
IRS990/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OfficerInd4X
IRS990/Form990PartVIISectionAGrp/OfficerInd5X
IRS990/Form990PartVIISectionAGrp/OfficerInd6X
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt00
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt10
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt70
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt80
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt110
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt120
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt130
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt140
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1530138
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt166904
IRS990/Form990PartVIISectionAGrp/PersonNm0CHRISTINE WYMAN ROSSI
IRS990/Form990PartVIISectionAGrp/PersonNm1KARA B AYERS
IRS990/Form990PartVIISectionAGrp/PersonNm2KENNETH FINKEL
IRS990/Form990PartVIISectionAGrp/PersonNm3MICHELLE FYNAN
IRS990/Form990PartVIISectionAGrp/PersonNm4JAMES SHARPLES
IRS990/Form990PartVIISectionAGrp/PersonNm5KAREN BRAITMAYER
IRS990/Form990PartVIISectionAGrp/PersonNm6JULIE HOCKER
IRS990/Form990PartVIISectionAGrp/PersonNm7BILLY HUANG
IRS990/Form990PartVIISectionAGrp/PersonNm8TONY JACOBSEN
IRS990/Form990PartVIISectionAGrp/PersonNm9CINDY MEDINA
IRS990/Form990PartVIISectionAGrp/PersonNm10WENDY E SACKS
IRS990/Form990PartVIISectionAGrp/PersonNm11MICHAEL SHERIDAN
IRS990/Form990PartVIISectionAGrp/PersonNm12V REID SUTTON
IRS990/Form990PartVIISectionAGrp/PersonNm13EMILY F VOORDE
IRS990/Form990PartVIISectionAGrp/PersonNm14SCOTT WALLS
IRS990/Form990PartVIISectionAGrp/PersonNm15TRACY SMITH HART
IRS990/Form990PartVIISectionAGrp/PersonNm16KATHERINE E CARTER
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt120
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt130
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt140
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt15215284
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt16135886
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt120
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt130
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt140
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt150
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt160
IRS990/Form990PartVIISectionAGrp/TitleTxt0PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt2VICE PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt3VICE PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt4TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt5SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt14BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt15CHIEF EXECUTIVE OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt16CHIEF PROGRAM OFFICER
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01970
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0476575
IRS990/FundraisingDirectExpensesAmt0221658
IRS990/FundraisingGrossIncomeAmt0122838
IRS990/GainOrLossGrp/SecuritiesAmt0268764
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt015
IRS990/GovernmentGrantsAmt0196233
IRS990/GrantAmt0215021
IRS990/GrantsPayableGrp/BOYAmt0117500
IRS990/GrantsPayableGrp/EOYAmt087500
IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt0213149
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt0213149
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0175553
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0175553
IRS990/GrantsToIndividualsInd01
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt0764691
IRS990/GrossReceiptsAmt03325665
IRS990/GrossSalesOfInventoryAmt0996
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd01
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt015
IRS990/IndivRcvdGreaterThan100KCnt02
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartIIIInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt01450
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt026008
IRS990/InformationTechnologyGrp/ProgramServicesAmt07609
IRS990/InformationTechnologyGrp/TotalAmt035067
IRS990/InsuranceGrp/FundraisingAmt02943
IRS990/InsuranceGrp/ManagementAndGeneralAmt0801
IRS990/InsuranceGrp/ProgramServicesAmt04895
IRS990/InsuranceGrp/TotalAmt08639
IRS990/IntangibleAssetsGrp/BOYAmt0602
IRS990/IntangibleAssetsGrp/EOYAmt019324
IRS990/InterestGrp/ManagementAndGeneralAmt03491
IRS990/InterestGrp/TotalAmt03491
IRS990/InventoriesForSaleOrUseGrp/BOYAmt07336
IRS990/InventoriesForSaleOrUseGrp/EOYAmt07107
IRS990/InvestmentIncomeGrp/ExclusionAmt040452
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt040452
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt01599239
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01191432
IRS990/IRPDocumentCnt04
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt042041
IRS990/LandBldgEquipBasisNetGrp/BOYAmt08804
IRS990/LandBldgEquipBasisNetGrp/EOYAmt06782
IRS990/LandBldgEquipCostOrOtherBssAmt048823
IRS990/LegalDomicileStateCd0GA
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0495927
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembershipDuesAmt031441
IRS990/MembersOrStockholdersInd01
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0OUR MISSION IS TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE AFFECTED BY OI THROUGH RESEARCH TO FIND TREATMENTS AND A CURE, EDUCATION, AWARENESS, AND MUTUAL SUPPORT. THERE ARE AT LEAST FOUR DISTINCT FORMS OF OSTEOGENESIS IMPERFECTA REPRESENTING EXTREME VARIATIONS IN SEVERITY AND AFFECTING 20,000 TO 40,000 PEOPLE IN THE UNITED STATES.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt01577936
IRS990/NetAssetsOrFundBalancesEOYAmt01367833
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt0268764
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0268764
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt0-98820
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt0-98820
IRS990/NetIncomeOrLossGrp/RelatedOrExemptFuncIncomeAmt0767
IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt0767
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-190649
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt024518
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt031799
IRS990/NoncashContributionsAmt05258
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt07985
IRS990/OccupancyGrp/ManagementAndGeneralAmt011767
IRS990/OccupancyGrp/ProgramServicesAmt041912
IRS990/OccupancyGrp/TotalAmt061664
IRS990/OfficeExpensesGrp/FundraisingAmt02518
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt03712
IRS990/OfficeExpensesGrp/ProgramServicesAmt013219
IRS990/OfficeExpensesGrp/TotalAmt019449
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt0123522
IRS990/OtherAssetsTotalGrp/EOYAmt075730
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt013283
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt019575
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt069716
IRS990/OtherEmployeeBenefitsGrp/TotalAmt0102574
IRS990/OtherExpensesGrp/Desc0BANK FEES
IRS990/OtherExpensesGrp/Desc1DUES AND SUBSCRIPTIONS
IRS990/OtherExpensesGrp/Desc2POSTAGE & DELIVERY
IRS990/OtherExpensesGrp/Desc3PRINTING & DUPLICATING
IRS990/OtherExpensesGrp/FundraisingAmt02985
IRS990/OtherExpensesGrp/FundraisingAmt12513
IRS990/OtherExpensesGrp/FundraisingAmt22362
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt022922
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt14400
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt23704
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt33481
IRS990/OtherExpensesGrp/ProgramServicesAmt02081
IRS990/OtherExpensesGrp/ProgramServicesAmt115667
IRS990/OtherExpensesGrp/ProgramServicesAmt213191
IRS990/OtherExpensesGrp/ProgramServicesAmt312398
IRS990/OtherExpensesGrp/TotalAmt025003
IRS990/OtherExpensesGrp/TotalAmt123052
IRS990/OtherExpensesGrp/TotalAmt219408
IRS990/OtherExpensesGrp/TotalAmt318241
IRS990/OtherLiabilitiesGrp/BOYAmt0106228
IRS990/OtherLiabilitiesGrp/EOYAmt054012
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/Desc0MISCELLANEOUS INCOME
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt043521
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt043521
IRS990/OtherRevenueTotalAmt043521
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0115605
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt0170364
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0606804
IRS990/OtherSalariesAndWagesGrp/TotalAmt0892773
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt010572
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt010816
IRS990/PayrollTaxesGrp/ProgramServicesAmt051667
IRS990/PayrollTaxesGrp/TotalAmt073055
IRS990/PensionPlanContributionsGrp/FundraisingAmt0710
IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt01691
IRS990/PensionPlanContributionsGrp/ProgramServicesAmt09573
IRS990/PensionPlanContributionsGrp/TotalAmt011974
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt021968
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt00
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt074763
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt061893
IRS990/PrincipalOfficerNm0TRACY SMITH HART
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0CONFERENCE
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt0215927
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt0215927
IRS990/ProgSrvcAccomActy2Grp/Desc0EDUCATION AND SUPPORT:ADULT HEALTH INITIATIVES - THE OIF CONTINUES TO PRIORITIZE OUR WORK TO BETTER UNDERSTAND THE IMPACT OF OI AS PEOPLE AGE, AND WAYS WE CAN BEST SERVE OUR ADULT COMMUNITY. IN ADDITION TO PRODUCING RESOURCES LIKE THE OI ADULT HEALTH TOOLKIT TO HELP OUR ADULT COMMUNITY MANAGE THEIR CARE, THE OIF PARTNERS WITH CLINICIANS, RESEARCHERS, AND OTHER RARE BONE DISEASE GROUPS TO CONTINUE TO LEARN MORE ABOUT HOW OI IMPACTS THE BODY AS A PERSON AGES AND IMPORTANT ISSUES FACING THE ADULT COMMUNITY LIKE THE TRANSITION OF CARE FROM PEDIATRIC TO ADULT CARE AND GAPS IN ADULT CARE. WORK CONTINUES ON THE OIF'S SOMEWHERE TO GO FOR ADULTS WITH CHILDHOOD-ONSET RARE DISEASE PROJECT, WHICH AIMS TO IDENTIFY AND ADDRESS THE CHALLENGES AND SOLUTIONS FOR TRANSITIONING PATIENTS FROM PEDIATRIC TO ADULT CARE, PARTICULARLY FOR THOSE WITH RARE AND COMPLEX HEALTH ISSUES. SUPPORT GROUP PROGRAM - COMMUNITY FEEDBACK HAS INDICATED A DESIRE FOR SUPPORT GROUPS TAILORED TO SPECIFIC DEMOGRAPHICS (E.G., WOMEN WITH OI, PARENTS OF CHILDREN WITH OI, TEENS, ETC.). THIS FEEDBACK HAS BEEN VOICED DURING REGIONAL SUPPORT GROUP MEETINGS, EITHER VERBALLY OR THROUGH CHAT, AS WELL AS OUTSIDE OF THESE MEETINGS THROUGH DIRECT INQUIRIES TO OIF STAFF. BASED ON THE DATA AND COMMUNITY FEEDBACK, THE OIF HAS DECIDED TO REVAMP THE PROGRAM BY TRANSITIONING TO AFFINITY GROUPS. THE OIF IS CONSIDERING ESTABLISHING GROUPS FOR WOMEN WITH OI, MEN WITH OI, PARENTS OF CHILDREN WITH OI, YOUNG ADULTS (AGES 18-30), AND INDIVIDUALS AGING WITH OI. THE OIF PLANS TO LAUNCHING THE AFFINITY SUPPORT GROUPS WITHIN THE NEXT FISCAL YEAR BY THE END OF 2025.TOOLKIT FOR SCHOOL-AGED FAMILIES - THE OIF HAS ALMOST COMPLETED THE FINAL DRAFT OF THE TOOLKIT FOR SCHOOL-AGED FAMILIES AND IS IN THE PROCESS OF SENDING OUT SPECIFIC SECTIONS FOR REVIEW AND FEEDBACK MEDICAL PROFESSIONAL AND COMMUNITY-MEMBERS. TOPICS INCLUDED IN THIS NEWEST RESOURCE COVER DAYCARE/AFTER-CARE PROGRAMS, EXTRACURRICULAR ACTIVITIES, NAVIGATING THE SCHOOL SYSTEM (IEP/504 PLANS, HOME AND HOSPITAL TEACHING, TRANSITIONS BETWEEN ELEMENTARY, MIDDLE, HIGH SCHOOL, AND COLLEGE), AND AGE-APPROPRIATE LANGUAGE, DEFINITIONS, ADVOCACY INFORMATION AND RESOURCES FOR EACH AGE GROUP. LIKE THE OIF'S EXISTING TOOLKITS ON ADULT HEALTH AND NAVIGATING A NEW DIAGNOSIS, THE SCHOOL AGE TOOLKIT WILL BE A COMPREHENSIVE BOOKLET, AVAILABLE ELECTRONICALLY AND IN-PRINT IN ENGLISH, SPANISH AND FRENCH, WITH INFORMATION FOR BOTH PATIENTS AND PROVIDERS. THESE INFORMATIONAL TOOLKITS ARE AN EFFECTIVE WAY FOR FAMILIES TO LEARN HOW TO BEST MANAGE AT ALL STAGES OF LIFE, AND ARE AN EASY RESOURCE TO SHARE WITH PROVIDERS, TEACHERS AND SCHOOLS. TO DATE, THE OI ADULT HEALTH AND THE NAVIGATING A NEW DIAGNOSIS TOOLKITS HAVE BEEN ACCESSED ELECTRONICALLY MORE THAN 21,000 TIMES AND THERE ARE MORE THAN 3,500 COPIES IN PRINT.YOUNG ADULT ENGAGEMENT - IN JANUARY AND FEBRUARY 2025, THE OIF INTERVIEWED AND HOSTED LISTENING SESSIONS WITH YOUNG ADULTS (18-30 YEARS OLD) WITH OI. THIS PROJECT BEGAN BECAUSE YOUNG ADULTS HAVE BEEN UNDERREPRESENTED AT PAST OIF EVENTS AND IN VIRTUAL PROGRAMS, AND WE WANTED TO LEARN MORE ABOUT THE NEEDS OF THIS GROUP AND THEIR PERCEPTIONS OF THE OIF. OVERALL, WE SPOKE WITH A TOTAL OF 9 YOUNG ADULTS OVER 2 WEEKS. IN THESE CONVERSATIONS, SOME TRENDS AND TAKEAWAYS EMERGED. EDWARD D. CRANSTON COLLEGE SCHOLARSHIP - THE EDWARD D. CRANSTON COLLEGE SCHOLARSHIP IS FOR STUDENTS WITH OSTEOGENESIS IMPERFECTA WHO ARE APPLYING TO OR HAVE BEEN ADMITTED TO A COLLEGE OR UNIVERSITY. APPLICANTS MUST ARTICULATE A NEED FOR SCHOLARSHIP ASSISTANCE TO MEET THEIR ACADEMIC GOALS, BE COMMITTED TO FULL-TIME COLLEGE ENROLLMENT, AND SHOW PROOF OF ENROLLMENT TO RECEIVE THE FUNDS. THE CURRENT CYCLE OPENED ON JANUARY 13TH AND WILL RUN THROUGH APRIL 14TH. THE REVIEW COMMITTEE WILL MEET IN MAY TO DISCUSS AND CHOOSE A RECIPIENT. ANGEL PACHECO, WHO IS ATTENDING THE UNIVERSITY OF NEW MEXICO, WAS THE RECIPIENT OF THE SCHOLARSHIP FOR THE 2024 CYCLE. ANGEL WAS SELECTED FROM NEARLY 30 APPLICANTS BY A CO
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0897262
IRS990/ProgSrvcAccomActy2Grp/GrantAmt0173681
IRS990/ProgSrvcAccomActy3Grp/Desc0NATIONAL AND REGIONAL CONFERENCES: NATIONAL CONFERENCE - THE NEXT OIF NATIONAL CONFERENCE WILL BE HELD ON JULY 23-26, 2026, AT THE ROSEN CENTER IN ORLANDO, FLORIDA. THE ROSEN CENTER HAS AN ASTOUNDING 69 ADA ROLL-IN SHOWER SLEEPING ROOMS. PLANNING FOR THE CONFERENCE HAS BEGUN WITH LISTENING SESSIONS FOR YOUNG ADULTS TO LEARN HOW THE OIF CAN BEST SERVE THEIR UNIQUE NEEDS. REGIONAL CONFERENCES - OIF REGIONAL CONFERENCES BRING INFORMATION TO LOCAL COMMUNITIES THROUGHOUT THE US AND CANADA. THE OIF HOSTS 3-4 REGIONAL CONFERENCES EACH YEAR. OIF REGIONAL CONFERENCES ARE ONE-DAY IN-PERSON MEETINGS HELD IN CITIES AROUND THE US MEANT TO HELP COMMUNITY MEMBERS BETTER UNDERSTAND AND TREAT OI. REGIONAL CONFERENCES OFFER AN INTIMATE IN-PERSON EDUCATIONAL EXPERIENCE THAN THE NATIONAL CONFERENCE AND HISTORICALLY HAVE ATTRACTED MORE DIVERSE AUDIENCES WITH LESS EXPOSURE TO THE OIF'S PROGRAMS AND EVENTS. EACH MEETING DRAWS ABOUT 100 ATTENDEES, MOST OF WHOM HAVE NEVER ATTENDED AN OIF EVENT BEFORE. IN THE LAST YEAR, THE OIF HOSTED REGIONAL CONFERENCES IN ATLANTA, GA, DENVER, CO AND PORTLAND, OR.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt0407863
IRS990/ProgSrvcAccomActy3Grp/RevenueAmt0215927
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt0223993
IRS990/ProgSrvcAccomActyOtherGrp/RevenueAmt044288
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt02105123
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0663333
IRS990/PYInvestmentIncomeAmt057062
IRS990/PYOtherExpensesAmt0617462
IRS990/PYOtherRevenueAmt029540
IRS990/PYProgramServiceRevenueAmt080195
IRS990/PYRevenuesLessExpensesAmt0-179165
IRS990/PYSalariesCompEmpBnftPaidAmt01170290
IRS990/PYTotalExpensesAmt02451085

Document Assets

No mirrored PDF or thumbnail assets are attached yet.